Malta will be joining the rest of the world to mark World Parkinson’s Day on Tuesday. Two members of the Malta Parkinson’s Disease Association diagnosed with Parkinson’s share their story with Simonne Pace in a bid to spread more awareness about the condition and let others know that they’re not alone.

Parkinson’s organisations around the world are set to unite on World Parkinson’s Day on Tuesday – the birth date of James Parkinson, who first identified the condition in his landmark paper ‘An Essay on the Shaking Palsy’.

Two of Europe’s leading Parkinson’s orga­ni­sations – the European Parkinson’s Disease Association and Parkinson’s UK – have joined forces to launch a global campaign to raise international awareness of the disease, 200 years after it was first established as a health condition. Yet, still there is no cure.

The #UniteForParkinsons campaign will mark this milestone on World Parkinson’s Day. Already supported by many Parkinson’s organisations and campaigners around the world, including the Malta Parkinson’s Disease Association, the campaign aims to raise an unprecedented amount of awareness on the day by using #UniteForParkinsons on social media.

There are about 1,400 people in Malta currently living with Parkinson’s disease.

Parkinson’s is a disease of the central nervous system caused by loss of dopamine-producing cells in the brain.

“However, exactly why these cells become lost is unclear,” the association’s president, Veronica Clark, told The Sunday Times of Malta. “Research suggests that a combination of genetic and environmental factors may be responsible.”

The association offers support on different levels: through its monthly meetings, where it learns more about PD and where people with the same condition socialise; and through its social events and fundraising activities, where it directs people with PD to the right health professionals to ensure they are getting the care they need.

“Raising awareness is imperative to making the lives of those with Parkinson’s easier. It means they can be open about their condition and receive empathy and support. No one should have to live with Parkinson’s alone, but many are scared to share their stories due to people’s reactions. This is slowly changing and we are playing a part in that. Raising awareness and improving knowledge within the health sector is also very important and this is a project we are currently working on,” said Ms Clark, an adult speech and language therapist.

“Many people have never heard of the disease, which means that perhaps when their loved one tells them that they have just been diagnosed, they have no idea what they are talking about. The more awareness we can raise, the more the person with Parkinson’s can feel supported in the community.”

Look up the association on Facebook and Twitter (@maltaparkinsons). Twibbons is also available. The MPDA will also be setting up a stand at the Ferries, Sliema, on Saturday from 10am to 1pm.

Facts you should know

• Most people are over 60 when they develop PD. One in 20 is under 40.

• Men have a slightly higher risk than women.

• Parkinson’s is difficult to diagnose because there is no specific test for the condition.

• Symptoms vary from person to person, including motor symptoms (typically slowness of movement, stiffness and tremor) and non-motor symptoms (which may include small handwriting, softer voice, swallowing problems, depression and anxiety). If you suspect you or someone you know has Parkinson’s, it is important to see a doctor or neurologist.

• There is no cure yet. But medication and therapies can help manage the symptoms.

• Because of the various symptoms, a multidisciplinary approach is required to treat PD.

• Physiotherapy, speech therapy and occupational therapy can all be accessed locally, as well as other complementary therapies such as tai chi, yoga and massage.

• Dance therapy has proven to be beneficial in dealing with symptoms such as freezing gait, balance and motor disability. It has also been seen to improve mood, mental health and, ultimately, quality of life. The association holds dance therapy classes, which provide a place for support, interaction and freedom of movement.

Source: epda.eu.com

Anna Manduca,

68, retired, and her husband Ray.

What is daily life like?

It changes every day, which is frustrating, since my condition has slowed me down considerably. To make matters worse, it has also affected my memory, which confuses me sometimes. There is also the fact that I often fall over any time without warning.

When were you diagnosed with PD?

In 2003, at the age of 53.

First symptoms?

I first noticed that I was not swinging my arms as a person normally does when walking, and some time later I started dragging my right foot slightly, so I went to see a neurologist.

What treatment/therapy do you get?

I had a physiotherapist who came home twice weekly to help and show me which exercises I should do for balance and walking. I now attend dance therapy sessions twice weekly, which helps me relax my muscles and improves balance and movement.

How does Malta fare when it comes to availability of treatment?

I think the required treatments are available.

Where do you go for treatment? Private care? Hospital?

I go to Mater Dei Hospital to see a neurologist every six months or so, and this is a free service. I also go to Karin Grech Hospital to see a geriatric consultant who specialises in PD, which is also a free service. However, when I feel the need and cannot wait for my hospital appointment, then I see the neurologist privately, and I cover the cost of the visit.

Is there enough awareness on PD in Malta?

The majority of people do not know anything or enough about PD. People associate PD with ‘tremor in the hands’ and, although that is part of it, it’s far more complex than that.

What is your biggest wish?

To wake up one morning and find that my PD is all behind me. But mostly that a cure is found soon for people with PD.

Ronald Agius,

82, self-employed in the rental business, and his wife Margaret

What is daily life like?

Daily  life is good apart from some days. Sometimes I get what I call travelling pain. It comes and goes in different places.

When were you diagnosed with PD?

I was diagnosed with PD about three-and-a-half years ago.

First symptoms?

A severe lack of energy and tremors in my left hand.

What treatment/therapy do you get?

I take five pills a day, Levodopa carb 100/10mg. I also go to dance classes twice a week.

How does Malta fare when it comes to availability of treatment?

It’s very good.

Where do you go for treatment? Private care? Hospital?

I go to a private hospital and I cover the cost.

Is there enough awareness on PD in Malta?

I feel there is more awareness about PD since the association is very involved in setting up programmes.

What is your biggest wish?

My biggest wish is to find a cure, or at least stop the condition from getting worse.

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